I Am A Unicorn

I’ve been told I’m special and one of a kind my whole life. It wasn’t always intended in a positive way. But I suppose it is the truth.

I’ve said this before – everyone is different. Everyone’s cancer is different, and everyone’s response to cancer treatment is different. Some people get violently ill from chemo and radiation treatment. Some people don’t. Some people have major reactions to anti-nausea medications and some don’t Everyone experiences side effects differently. Yes, there are some typical reactions to these medications, but not everyone experiences them, nor do they experience them in the same way. Same with surgeries and pain medications and a host of other things directly related to cancer or not. We are all different.

I’ve so far, knock on wood, not gotten sick from chemo. I did have a strong reaction to the first anti-nausea drug I was on, but after I got past that, I was “okay,” which means that I would feel gross about the 3rd day after chemo, then I’d start feeling better a few days later. Feel almost normal the following week, just in time to start the cycle over again.  I made it through 5 months of dose-dense chemo cocktails that way. I was worse for the wear but not knocked down. After the cancer spread to the lymph nodes under my sternum, I suffered through another miserable 4 months of chemo that made me wish I were sick and almost 2 months of radiation that didn’t give me the benefit of even a hint of bronze look to my skin. Knowing that I can’t spend any time in the sun after that bothers me a little, but I’d rather go out covered than have to worry about what happens if I don’t.

While losing my hair bothered me some, it bothers my mother more than it does me. It will grow back. Yeah, it won’t be the same, but I’m not sure I want it to be. When I last saw my own hair, it was a mousy blond-ish gray. I don’t want that back. I’d rather just be gray. Or purple or even  back to blonde. Maybe I could go red. Maybe I could go straight white. My options are open. The ability to dye my hair doesn’t make me a unicorn, either.

I don’t usually have issues recovering from surgery. In all honesty, I haven’t had many of the issues other women who’ve had a lumpectomy/partial mastectomy and lymph node dissection have had. My incisions all healed nicely. I have some limitations to my range of motion and the sensation in that arm, but not so much that I can’t do normal things. Surgery to remove a sizable mass in my brain was a little different story. For whatever reason, I ended up with a dissolvable stitch that didn’t want to dissolve and a nasty-assed infection in my head that no one could really explain. An infection that caused a neurosurgeon to drill a hole in my skull so they could figure out what kind of bug it was. I’m not a unicorn because I went home alone after that surgery. Although, you’d think that would qualify.

There were multiple radiation treatments that sucked my energy away all the times I’ve had them. In the nearly 2 years since I was diagnosed, having my cancer spread and all the subsequent treatments, I’m still somehow standing.

None of this really makes me a unicorn. I see other women who’ve had surgery after surgery and have been on all kinds of chemos and hormone suppressing drugs that are also still standing.

What makes me a unicorn is not that I was determined to get back to as much of my old life as I could at each major juncture. I think all of us going through this want as much normality back as we can possibly get. Despite chemo robbing me of my ability to remember anything having to do with a date or a deadline, or much anything else, really. I’ve worked hard to be able to maintain focus for more than 30 minutes to an hour. To remember words, to be able to maintain a train of thought and be able to read more than a couple of sentences before I’m exhausted and frustrated. I’ve had to fight to be able to juggle tasks at work. To keep track of email threads.

It’s not that I went back to work after chemo, after my lumpectomy, my radiation or my subsequent chemo and radiation treatments. It’s not that I can manage a full day of work most days. Going back to work with chemo brain was a huge challenge. There were times I felt absolutely useless to my company. There were many days where I spent my entire lunch hour napping because I couldn’t keep my eyes open. I still hit those walls from time to time. They’re not as often as they once were.

What makes me a unicorn is my magical ability to make this look easy from the outside. So easy that people too easily forget that I have a terminal disease. So easy that while I can do the occasional 14 hour day, they forget that I can’t maintain this level of energy or commitment anymore because cancer makes me pay later. There’s so much that others just don’t see that make them think I’m doing something special and heroic.
It’s not. I’m just living day to day like everyone else.

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A Year After the Craniotomy

October 1, 2019

Today was the one-year anniversary of the craniotomy where a tumor the size of a lime slice was removed from my brain. It was also my quarterly scan day where I have my CT scans, bone scan and meet all of the doctors on my care team.

Today took more of a toll on me than I anticipated. While I usually have a hard time sleeping on the night before scan days – because I have to get up a lot earlier than I’m used to so that I can be downtown on time – I’d do this even if I had to go into the office, so it’s not just the “scanxiety fueling the sleepless night. The stress of the conversations around my most recent MRI, the anticipation of meeting my palliative care doctor for the first time, and the regular every day stressors of work and life doing metastatic cancer alone.

Those who know me well know that I’m not one for tears. I found myself fighting off tears this morning nearly all the way downtown to start my day of scans and appointments. I was sending an email to my management about some problems we were having in getting a contract signed with an existing customer. It was hard admitting in black and white that I was struggling. That I wasn’t enough. That I couldn’t do the things I used to be able to do. The responses I was getting made me feel invisible. I realized later that I wasn’t asking for the right things. That I was not wasn’t communicating my needs clearly.

I ended up, a couple of days later, sending an email to the same management team stating out loud, as it were, that my fears were taking over my life. Oct 1st was the anniversary of the craniotomy. The surgery from which I ended up with a MRSA infection next to my brain. The infection that cost me my energy, my ability to do a lot of things without worrying about falling down, or trying to ascertain whether a twitch was a twitch or if it was a focal seizure. The condition that cost me much of my confidence in my ability to function on my own.

Looking back, I keep seeing the same story – something shows up on a scan, decisions are made in how to treat it, treatment is administered and side effects, anticipated or not, are managed as best as I can. The infection wasn’t anticipated. The time it took for the antibiotics to kill the infection wasn’t expected. The multiple hospital stays and home health nursing care weren’t on my radar.

All of these surprises took their toll. I just had another MRI and results were not conclusive in any direction.

I’m scared. I don’t want to go through any of what I went through last year again. I still have a hard time walking in crowds. Fluorescent lights still bother my eyes. I’m not used to driving at night anymore and doing so tends to freak me out depending on the day.

On the flip side, I just went to my optometrist to double check my prescription before committing to buy a 3-month supply of contacts. I am still good with the prescription I got in July. I can see 20/20. The more I get out and walk and am active, the better I feel.

While this is all good, I still have the rest of the month to get through. I have another MRI in a couple of weeks. Another anniversary is coming up on the 31st.

Once I realized how much all of this was affecting how I handled regular run of the mill work stress, I asked the palliative care doctor to a referral to an onco-psychologist to talk through my fears and anxiety around everything happening right now and that I went through in the last year. Also to talk about my fears for the future.

While everything is positive right now, I know all too well how that can change in one appointment. While I can’t control what my cancer does or how the treatment works or not, I can manage how I react to it. My first response is always that this isn’t in my control. I can only deal with this one day at a time. My second is that no matter where I am on a given day, I hold out hope that things will remain or become positive. That my body will respond positively to the treatment. That my tumors will continue to shrink. That the side effects won’t completely sideline me. That when my cancer mutates beyond the treatment that there is a new one that will hold it at bay at least long enough to see the places I want to see, to do the things I want to do, to be able to be at my niece’s college graduation. To see all of my nieces and nephews settled down with jobs they love, a home and a family of their own if that’s what they choose. Behind that, I wish for a chance to retire at a “normal” age with some time left to round out those last things on my bucket list.

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A Million Regrets

I had dreams. I had aspirations to be great. I did nothing to achieve any of them.

I’ve squandered gifts, both material and talent, along with countless opportunities.

I grew up wanting to be a surgeon and to teach. I did neither. Life threw me some choices that were less like Frost’s fork in the road on a snowy evening than they were the turns on the Indiana Jones ride at Disneyland. You know the one – you’re going along down the track and all of the sudden you’re jerked in another direction. I was lucky to not be thrown from the car called life more times than I care to count.

I learned to love music and art. I After seeing some pictures at a local gallery in my home town, I brought my portfolio in and asked about showing my work. I was young. I was naive. I had no idea what I was doing. I had no idea who to talk to or how to have that conversation. Of course they showed me the door. They weren’t unkind, but they weren’t helpful, either. I walked out the door with a new vision. I wanted to create my own gallery. Not so much to show my own work, but to create a place where people without connections, without a name in the field, without a mentor to guide them along, could bring their work, see it hung on the walls and experience what it’s like when people see your work and talk about it. I had a taste of this experience once in college. I liked hearing what other people saw in my photos. I liked hearing what they liked and disliked. In some cases, I liked to hear the messages they saw I  photos that I made, not to shock or make a particular statement, but because I had an assignment and grabbed some things I had handy to make the assignment work.

I wanted to write. I wanted to write stories. I wanted to write books. I wanted to write music. I wanted to leave something permanent behind. I once sat down at a piano and put notes on paper in what I thought was the start of something only to have a music teacher tell me I hadn’t done anything. I went to college, took music theory and composition. I then wanted to get a PhD in Music Theory and Music Ed. I was given great gifts and opportunities there. I was petulant and immature and threw them away. I took a creative writing course in college. I still have some of the poems and pieces of stories that I wrote. They’re sitting in the drawer of a filing cabinet along with copies of poems and parts of stories and ideas for more that will never be fleshed out to fruition.  I’m blogging this bizarre and sometimes horrifying experience called cancer, so I guess the writing box is more or less checked.

I fell into law enforcement and criminal justice because I wanted to get a job that paid a decent wage without having to spend 8 years in school. Along the way I thought it would be great if I could also right the wrongs of the world. I spent 7 years in the field as a student and volunteer. What changed my mind was losing one of my fellow classmates and two colleagues to someone with a vendetta. I’d have made the same mistake of letting my guard down for 2 seconds, and so after the funerals,  I decided a career as a cop wasn’t for me. Today, to try to help change attitudes and right the wrongs, I shout into the void of Twitter along with so many other voices hoping that if enough of us say racism, misogyny, domestic and child abuse, and all the other awful things people do to each other are wrong, maybe someone will stop and hear what we have to say.

As a teenager cutting my neighbor’s grass with nothing in particular to think about, I thought about what kind of family I would have. I decided I would have twins plus one more all on my own. I named these children in my heart. Jonathon Andrew, Jonathon Michael, Michael Alexander. Alexander James. The only girl would be Lynn or Alexis or Sarah. By the time When I got older, I realized if I was going to have a serious career that would require many years of college, there wouldn’t be time to have these kids and raise them because daycare wasn’t really a thing yet and I really didn’t want to leave them with someone else anyway. After dating a few frogs, I came to the conclusion that kids weren’t in the cards for me.  I didn’t want to pass on the family crazy. I didn’t want to have to share custody with someone with whom I couldn’t trust not to hurt them or who would take them away from me because I wasn’t interested in being a stay-at-home mom. My biological clock ticked exactly 3 times during my adult life. Once in my mid-20s after I was divorced and dating someone who made me laugh and had a daughter I adored and who adored me. I had a non-biological niece and nephew that I loved to spoil. Again in my early 30s when I thought I had finally gotten past the hardship of the abusive marriage I escaped 5 years before. The last time was in my late 30s or early 40s, just before I had an endometrial ablation and I realized that I wouldn’t have a chance to have children of my own again after the procedure. Being diagnosed with Stage II breast cancer brought all of the regret of not having kids home when I thought about whether having kids or breast feeding would have changed my outcome, and that I’d have had family that would rush to my side and help to take care of me as the disease progressed.  These kids I’d have had would be in their 30s now. Spoiler alert: breast feeding would have changed nothing for me, and having kids would be no guarantee that they’d be willing or able to drop their own lives to help with mine, and I wouldn’t wish that on them even if they could.

So what have I done with all this time I had and didn’t realize wouldn’t last through my 60s much less my 80s? I worked. A lot. I poured all of myself into working. I had no overall career goals. For a number of years my goal was to bank 400 hours of vacation so that I could take a month off and see the world. Overtime? I have no kids or husband. Sign me up. I like the comp time or the extra cash.

I left myself no time to live. No time to breathe. No time to lay in the grass and look up at the stars. No time to ponder what I was missing or be grateful for what I had.

This has all come at such a huge cost. I’ve been tired. I’ve been sick. I’ve been stressed. So stressed that my body can’t process all the cortisol. The substance that alters immune system responses and suppresses the digestive system, messes with the systems that that control mood, motivation and fear. I’ve fought acid reflux since I was in high school. I’ve been depressed and anxious off and on throughout my adult life. I’ve had headaches that I thought would never end and made my head feel like it would explode. I gained weight that I couldn’t take off no matter how much cardio or weight lifting I did. This isn’t the life I wanted or envisioned. I often wonder what if and why not…

 

 

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MRI Symphonia

Entrada

Once upon a time, I was a music composition and theory major. Life happened and for a number of reasons, I had to give that up and do something else. When I went back to school years after I was supposed to graduate with a Bachelor’s, the dean asked me what I was going to do with my gazillion music credits. I told him that music would probably be my retirement job. Guess that’s not happening.

I’m getting used to showing up early for injections of nuclear dyes and scans every 3 months. I don’t care what anyone else says. Getting used to doing it doesn’t make it normal. Not in any sense of the word.

When I am prepped for the scan, they call IV therapy to come down and insert an IV either in my port or my arm/hand. Today it was my hand. It hurt like hell.  I am asked what Pandora channel I’d like to hear. I usually pick some sort of jazz. I have close to 70 channels in my collection. The hospital rarely has the channels I like to hear. I can’t bring my own earbuds into the machine area. They’d get sucked out of my ears and onto the machine as would my phone. I don’t bother dwelling on how unfair this is that I have to do this every 3 months when most other people are going on with their lives. When the machine fires up, I’m told how long each part of the scan will take. I just want to lose myself in the music and my thoughts. Things I want to do when I get home if the weather’s nice. Places I still long to go. Blog posts that may or may not ever actually get written. Every time I lay on an MRI table, I think about how I could write a modern symphony-like piece using the rhythms of the MRI machine. That’s probably not going to happen, either. Damn. So many life goals lost to cancer.

Sonate

bird whistle – squoosh bird whistle – squoosh bird whistle – squooosh 
march march march march march march march bird whistle – squoosh
bird whistle – squooosh

bird whistle – squoosh bird whistle – squoosh bird whistle – squooosh 
march march march march march march march bird whistle – squoosh
bird whistle – squooosh

Sometimes the sounds the machine makes remind me Gustav Holst’s First  or Second Suite  for Military Band. Or maybe Sea Songs by Ralph Vaughn Williams 

Other times it reminds me of Stravinksy’s Rite of Spring.

In a lot of ways, this whole process seems like some bizarre rite, A baptism of sorts. One where my brain is bathed in crazy metallic chemicals.  Sure, people have CT scans and MRIs for all kinds of reasons. I’ve had more than a few on my knees and shoulder. Turns out being athletic in any way eventually requires time with an orthopedic surgeon to repair a torn ligament somewhere. If only metastatic breast cancer were that easy. CT Scans. Bone Scans. MRIs. PET Scans. Lather, rinse, repeat.

I don’t dare ask them to find any of these pieces for me to listen to during my scan. I’d be there all day after tapping my foot or singing the parts that I still remember 30 years after playing them last. Funny how memory works. Especially when yours has been messed with by chemo and radiation.

I lie down on the table. It’s always cold and I’m usually shivering. Probably another reason they have to re-do some of the scans. For my brain MRIs I’m usually on the new 7 Tesla machine. No, it’s not named for the car. Tesla was an engineer and inventor. He did a lot of research with high-powered magnets. I get as comfortable as I can on this hard, cold surface. The technician hands me a bulb on a wire. “Here’s the panic button. Squeeze the ball if you need us to stop.”

Allegro

chunk chunk chunk

chunk chunk chunk

ZZZZT ZZZZZZT ZZZZZZT

ZZZZT ZZZZZZT ZZZZZZT

chunk chunk chunk

Tap Tap Tap
Tap Tap Tap
Tap Tap Tap

ZZZZT ZZZZZZT ZZZZZZT

ZZZZT ZZZZZZT ZZZZZZT

I need you to stop. I don’t want to be here. I know I really can’t say those words, though.  I’d love to stop this nightmare and get off of this ride that is metastatic (Stage 4) breast cancer. I am not at the end of this road yet. I don’t know yet how close I am, but I know I have a ways to go.

The voice in my headset says, “This scan will take 2 minutes. Can you hear the music okay?”

Faint tones of April in Paris remind me of a band trip to Northern Minnesota. The night I had a couple of extra gin & tonics so I could hit high “C” on the trumpet. Doc Z was on the piano. It was a good night. We played well. I went to bed happy.

Yes, I can hear the music. I’d love for it to be louder. It’s as loud as they are allowed to make it. Why should I care about my eardrums now? Sometimes it’s like a woodpecker next to my head pecking on a tree. Or maybe my head. It’s loud but it doesn’t hurt. The Cisplatin has already caused permanent hearing loss and damage. I have perpetual tinnitus. I only wish it came from standing within 10 feet of those speakers at the Prince concert those many years ago.

This passage requires me to lie completely still, which means I can’t really nap. It’s usually when I’m worried about twitching in my sleep that I start to twitch in my sleep. I’ve already had a couple of brain scans where they had to do sections over again just because I was breathing. Or shivering. I don’t remember which.  I know. The nerve, right?

Rondo

chunk chunk chunk

ZZZZT ZZZZZZT ZZZZZZT

Tap

Tap

Droning but not like a bagpipe.

Tap tap tap tap tap tap tap tap tap

BZZZZT BZZZZT BZZZZT BZZZZT BZZZZT BZZZZT BZZZZT BZZZZT BZZZZT BZZZZT

Tap tap tap tap tap tap tap tap tap

Can you hear my pulse?

I can’t, but I can hear the machine’s pulse. It’s as if it’s alive as I am. I take a minute to be grateful to have a pulse today. Cancer isn’t always this forgiving.

The technician comes in and injects me with the Gadolinium-based contrast.

I start to wonder why all of these patterns are base 8. Then I think of the programming lessons I got from my dad when I was a kid of 8 or 9 or maybe 10.

Binary. On/Off On/Off

Base 10

Base 8

Binary On/Off On/Off

Now come the long tones.

Trombones. Ready? Euphoniums? Where’s the tympanist?

bird whistle – squoosh bird whistle – squoosh bird whistle – squooosh 
march march march march march march march bird whistle – squoosh
bird whistle – squooosh

Now come the video game sounds. Pew Pew Pew

It reminds me of the Gnip Gnop game we had when I was a kid.

I want to be done. I want to get off this table and get somewhere warmer.
The klaxon sounds and a steady grinder noise reminds me of 2001 A Space Odyssey but without HAL 9000’s voice saying “I’m sorry, Dave. I can’t allow you to do that.” This mission is too important for me to allow you to jeopardize it.” I hear this instruction in my head. It’s too important to stop. That’s what would happen if I squeezed the ball. I’d end the mission. I can’t do that. I’m not done yet.

chunk chunk chunk

chunk chunk chunk

Anyway… I don’t think about when I get on the table other than trying to hear the music and waiting for it all to be done.

bird whistle – squoosh bird whistle – squoosh bird whistle – squooosh 
march march march march march march march bird whistle – squoosh
bird whistle – squooosh

 

bird whistle – squoosh bird whistle – squoosh bird whistle – squooosh 
march march march march march march march bird whistle – squoosh
bird whistle – squooosh

Scherzo

Gnip Gnip Gnip   Gnip Gnip Gnip    Gnip  Gnip Gnip   This part is sort of Stravinksy-esque. Then back to the video game. I’m jumping and running and collecting coins like a boss while I’m not doing a damned thing except lie here without moving a muscle.

chunk chunk chunk

Now the droning sound

Tap tap tap tap tap tap tap tap tap

BZZZZT BZZZZT BZZZZT BZZZZT BZZZZT BZZZZT BZZZZT BZZZZT BZZZZT BZZZZT

Almost done.

The voice in the headset says, “This last part is 4 minutes.”

It’s done.

It doesn’t seem like it was that long. It actually wasn’t. About 40 minutes. Still, every time I do this, seems a little bit like forever.

Finale

It’s done. The IV is removed from my hand. I give them the earplugs back. I take a minute to sit up before I try to stand. I wonder how many more of these I will need to do. Like the wise owl, I wonder how many more brain tumors it will take before I can’t do this anymore. And I pray for a miracle.

 

 

 

 

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See You Later, Ed Ackerson

I first met Ed Ackerson, a force majeur on the Twin Cities music scene, when I was 12 and we were in the same 6th grade class. I’d just moved to the suburbs of St. Paul from the inner city and was in a new school with new people and trying to find my way. Ed lived a few blocks up from where I lived. I had a hard time fitting in at that elementary school. Luckily, we all got punted into junior high and in another new school with many new faces we didn’t know the following fall, so we were all in that same uncomfortable boat. I remember that while Ed wasn’t ever one of those making life uncomfortable for anyone else.

Ed and I had some common friends over the years.  Many of them either played in bands with him or saw him play somewhat regularly at First Avenue in Minneapolis. I remember going to a couple of shows of his back in college when I was at UM. At that time, he was playing in his band, Polara. The band has its own star at First Ave. Pretty effing cool.  He and his band went out and did the rock star thing – touring, playing and recording. He was out running around with lots of alternative and  punk-like bands that I liked or was trying to like during the 90s – REM, Nirvana, Pearl Jam,  Blink 182 to name a few. His latest band was called BNLX. They did some tracks I really liked – 1929 and Opposites Attract, for example.

I’m sure Ed and I had classes together at some point. Chemo has eaten so many of my memories along with middle age that I can’t predict my memories anymore. I used to be able to distinctly remember things from when I was very small. I remembered experiences with a pretty excruciating level of detail. I could be counted on to remember song lyrics, lines from books, a lot of whacky trivia about movies and the people that were in them. At work, I was the one who could tell you how to fix something without having to look at the screen because I already had a picture of it in my head.  Now all those memories are pretty spotty if I have them at all. I barely remember what I did, who I talked to or what I saw yesterday much less something from a year or more ago.

 

I left Minnesota in the mid-90s so our paths didn’t cross again until Facebook came along for people not in high school around 2009. One of the things he’d post on Facebook that I really enjoyed were reviews of new bands/albums/talent he’d found and was recording or promoting. He was an encyclopedia of bands he’d known, heard of or worked with.

“Some of the biggest names in Twin Cities music passed through Flowers, including the Jayhawks, Soul Asylum, Motion City Soundtrack, and the Replacements.” – Erik Thompson – City Pages

Ed made music and recording and engineering his life and he was damned good at it. Looking back, I wish I’d have stayed in closer touch with Ed. One thing I’d wanted to do from the time I was in high school was be a professional recording engineer. I’m not saying that he’d have been receptive or had the time to entertain the idea between writing his own music, touring and recording it along with working with other bands in the Twin Cities. At this stage in my life, I can only hope that we’d have had at least a conversation about it had I approached him.

Two recent things really hit me in the feels. First was that he was able to go visit Abbey Road and talk to the recording engineers there in August. I didn’t know it then, but Ed was struggling through treatment for Stage 4 pancreatic cancer. A month or so later, his bandmate, and friend gave his wife a video of Pete Townshend of The Who doing a shout-out to him at a recent concert in Minneapolis. You’ve got to have some real street cred to have a rock superstar like Townshend call you out from onstage. I’m joking that I’m now a friend of a friend of a friend of Pete Townshend. It’s only fair… I’ve loved The Who since my dad started playing their albums for me in about 7th grade. I missed their concert here in Seattle last year or the year before because of my own cancer treatment.

I don’t remember exactly when his now wife, Ashley, joined him in the band. Once I saw them performing together, it made perfect sense. I can’t say how happy I am that he met, married and worked with his soulmate. As I watched via Facebook through the years, I saw they made a great pair both on and off stage. I really like what they’ve done with their current band, BNLX. It reminds me of a lot of other music I’ve really liked, but there’s no copycatting. It’s all Ed and Ashley. I’ve always admired how he stayed true to his own unique style, the Ed I knew back in 6th grade. That’s our kindred connection – we do things our way and pretty much to hell with what anyone else thinks. Since “finding” him again on Facebook in 2009, I’ve happily tagged along on his adventures with his music, his wife, Ashley, their daughter, Annika, and their beloved Boston Terriers.

Ed passed away a week ago today, just a few short weeks after announcing that he’d been fighting Stage 4 pancreatic cancer for over a year and that his condition deteriorating. I recognized our kindred spirit yet again – he didn’t let cancer take him down. He didn’t make a production of it. He kept his focus on the people he loved and the things he loved to do, just as I am. He describes pretty much how I feel about living with cancer in this video. As he says, there isn’t a lot of point in spending a lot of energy thinking about or dwelling on the what-ifs. It’s counterproductive. It saps energy and takes away the joy we have today. It’s in some ways a real gift to know that life truly is short and we need to make the most of every day. I’m sad that he left this world so soon. I am glad and grateful to have known him. I know his memory will live on in his music, his wife and daughter and the work he’s done with Flowers Studio. As much as others are saying good-bye, I can only say that I’m sure I’ll see you later.

 

 

 

 

 

 

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Pitfalls of Home Health Care

April 2019

I can say with absolute certainty that I had different expectations for how home health would work. I thought I would feel and be cared for in the same way I would be in a hospital or healthcare facility. I expected the nurses and therapists to care about more than my vital signs. I didn’t expect to be lectured weekly by a speech therapist about how having other people help me means that I don’t nee this service.

I expected that when occupational therapy was ordered, there would be occupational therapists available to see me. I expected that those who would come to my house would know something about what was in my charts and what we needed to work on. I didn’t get that.

I was supposed to have help wit bathing. In the rehab unit patients get showers twice a week. When on home health, if they can find a nursing/bathing aid, it’s once a week. in the 8 weeks I had this “service,” I had 2 bathing aids come out, and I only got the later ones because I complained loudly to my oncologist that I wasn’t getting the level of care my insurance was paying for. Why my insurance company accepts this is beyond me.

I cannot imagine being an older person who has trouble getting around. Someone like my grandfather, a double amputee who had a harder time being mobile as he got into his 80s. He had volunteers that came out to help him with laundry and cleaning. I expected that I would somehow get this same level of care. I didn’t.

The other thing is that a lot of the programs that can help are based on your income. For a lot of these programs, I don’t qualify. I’m not old enough or broke enough to get this kind of help.

When I was released home on my own, the only program I qualified for through the hospital/rehab center was Meals on Wheels.

There is a program through the American Cancer Society where cancer patients can get free rides to treatment and cancer-related appointments. They are limited in number.

Outside of that… if you’re not destitute, on Medicare and old, there aren’t many options. Even then, they’re pretty limited unless you’re able to pay out of pocket.

  • There’s no help to clean the house.
  • No service to come do the dishes.
  • No service to come take out the trash
  • There’s no help to do the laundry.
  • There’s no help to get around outside of the handful of rides offered by the Cancer Society and what the hospital can help to provide.

For all of these things, I have to rely on the generosity of neighbors and friends.

I recently looked into filing for disability. As it turns out, even though I’m not able to do a lot of the things I used to be able to do, I’m still not disabled enough to qualify for any kind of meaningful help.

I can’t imagine what this was like for my grandparents. I can’t imagine what this will look like for my parents in the next 10 years.

My advice? Don’t get sick and don’t get old.

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My Lucky Day

September 13, 2019

Today was Friday the 13th and a Full (Harvest) Moon

I was having some minor vision issues again last month, so I asked about moving my MRI up. The scheduler called two weeks after my request and the oncologist’s request to move it up. I had the scan yesterday afternoon. I got the results this morning.
No surprise. There’s something going on. The systemic treatment (chemo) doesn’t really cross the blood-brain barrier, so it’s effectiveness is limited.

I had an appointment this morning with my oncologist. There is no surprise to me that it appears there is something going on in my brain. I am at almost exactly 10 months to the day from when I had my first brain tumor surgically removed. The neurosurgeon told me prior to the surgery that the average time for regrowth is 10 months. So here I am. A little scared about what this means if there is new tumor growth in my head and hoping that the current chemo is actually doing something and what we’re seeing is still the same treatment after effects we’ve been watching for the past 7 months. 

I tried to talk with my radiation oncologist after my appointment with my regular oncologist, but the radonc was super busy. Knowing that there were spots we were watching, and that the report didn’t outright say there were new lesions, I’m not freaking out yet. I’ll save that for later, if it’s even warranted.

Monday, September 16, 2019

I heard from the radiation oncologist this morning. I asked her to explain the enhancements noted in the radiology report for my brain MRI. There are areas where the contrast dye is leaking out of my blood vessels, which means there is inflammation, which is expected after high doses of radiation therapy. She also said it’s hard to tell from this type of MRI whether they’re seeing scar tissue or new tumor growth. So the plan for now is to do another scan in a month that will look at my brain in a different way To me, it’s like when they found the skin calcifications in my breast tissue just before the lumpectomy surgery last year. The way they determined that it was a “normal” skin calcification vs new tumor growth was to get different angles from the mammogram because the cells show up a different way at different angles. This is also similar to the CT scan not long after radiation showing some radiation after effects in my lung tissue on the right side. 

She’s also taking my case to the tumor board this week where they’ll decide the best course of action in determining next steps, which could include another surgery or possibly whole brain radiation once the new MRI scans are done.

Where’s that leave me? I little less stressed for now. Still praying for some sort of miracle that all this stops long enough for me to go do some of the things on my bucket list before it’s too late/hard to do so.

 

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